Just over two weeks ago my 10 year old daughter had her first IV Infliximab dose. It had been spoken about for 3 months but due to an ongoing flare increased symptoms & an MRI of intestines Infliximab was to be started. I had to go for a private walk, so my daughter couldn't see my worrie & tears. The Rhumatologists said its about quality of life & she felt this was now a medicine we needed to try. My daughter has had Stevens Johnson syndrome to a medication before so this is always a real worrie.
After 2 weeks in hospital her little body was still so ill. I was carrying her as her joints was so bad, she was struggling going to the toilet & only doing little pellets. Not to mention the massive headaches, bad. Left eye and a mouth full of ulcers & below. She is so amazing BUT she lost her will to live. What am I to say? What I did was tell her too not let this win... Fight. How bloody selfish am I. We lay on the bed & cried together. I can see how painful & shattering this is. But it's not me.
We are her parents, placing her on these medicines, in a hope for a better life. Freedome from pain. After 8 days we experienced it. Our daughter woke, walked out and said, "I think my new medie is working I feel great...." My heart leaped & I hugged her praying this lasts. It did for a full 4 days, she went to school for day 6 & 7 for the term. We heard laughter, saw a little run but best of all done with her brother. Unfortunately she woke with all symptoms back again. Saw the Rhumatologists who said it will be interesting to see after next dose.
That was last Friday. The treatment makes her feel terrible almost agitated & glases over. She had a massive headache, but is this Behcet's or treatment. I felt traumatized to watch her once again go through yet another bad feeling. Once home & the kids were in bed i sooked & sooked & took all night to stop. I hoped we were not creating a war in her body of hell.. Sounds rediculous but its been so stressful for such a long time. Yesterday still horrible, but today not bad. Fingers crossed she can have that break from BD ASAP. I think of the wonderful 4 days we had to keep my sad feelings away.
I have been reading all the blogs all morning and think you are all an inspirational. XO to you all.